The theme for our inaugural Hypermobility Awareness Week is:

‘the HYPE about HYPERmobility’

THE FACTS:

Joint hypermobility is a descriptive term, not a diagnosis in itself. It means there is more than expected movement in a joint of the body.
You can have joint hypermobility and no other symptoms
Joint hypermobility can be limited to a few joints or can be more widespread
When joint hypermobility is part of a condition or syndrome it usually causes PAIN and can cause joints to dislocate or partially dislocate (sublux)
Someone with joint hypermobility can LOOK just like anyone else, but they probably don’t FEEL like everyone else.
Having hypermobility is not always beneficial, by any stretch of the imagination
You can have joint hypermobility with other symptoms including joint pain & fatigue
Joint hypermobility is found as part of conditions like The Hypermobility Spectrum Disorders and Ehlers-Danlos Syndromes (not exclusively)
Joint hypermobility can be a symptom of a genetic syndrome like Ehlers-Danlos Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome or Osteogenesis Imperfecta
Joint hypermobility related conditions have a host of other symptoms which can make the individual very unwell, limit their function and cause significant disability
There is more to a hypermobility related condition than meets the eye

Why is it important to know about joint hypermobility conditions?

  • Many of the genetic syndromes which involve hypermobility also have symptoms which can be LIFE-THREATENING
    • This is particularly the case in:
      • Vascular Ehlers-Danlos Syndrome
      • Loeys-Dietz Syndrome
      • Marfan Syndrome
  • Many of the hypermobility related conditions, including The Hypermobility Spectrum Disorders, have numerous symptoms which can be life-interfering, including dysautonomia, POTS, gastrointestinal issues, pelvic organ prolapse, anxiety disorders, and sleep disturbances to name a few.
  • Someone you love may be living with a hypermobility related condition and not feel supported or believed. So many suffer in silence.
  • Hypermobility is often seen as a beneficial or positive trait when it’s not always the case. Hypermobility can hurt!
  • Joint hypermobility that isn’t managed well may lead to early onset osteoarthritis, another painful joint condition which is irreversible. Intervention can help.
  • Much of the medicine and allied health fraternity haven’t caught up with the significance of hypermobility & its impact on the individuals’ life. Patients are often educating doctors about these conditions. Knowledge is power. If you think you have a hypermobility condition, you can read more HERE.

Why do we need to increase awareness and “hype” about Hypermobility?

The story of too many patients is one where they were not diagnosed with hypermobility until:

They had unnecessary medical procedures.

They fell pregnant and their body fell apart, literally.

They had failed orthopaedic surgeries.

They had children and their child was diagnosed with hypermobility.

They had been accused of being a hypochondriac or a malinger.

They googled “bendy joints” or “super flexible with pain” or some similar term and went to a doctor or physio about it.

Those stories need to change for future generations.

We want to hear of people being diagnosed early. Early diagnosis means:

  • Less pain
  • Less disability
  • Fewer unnecessary procedures and failed surgeries
  • Fewer complications from surgeries and procedures
  • Better fatigue management
  • Greater ability to maintain meaningful employment
  • Proactive management of co-occurring illnesses and symptoms
  • Education of the patient so they can better self-manage their symptoms
  • Better outcomes!!

Why is awareness week in May?

  • The Ehlers-Danlos Society traditionally reserves the whole of May for Awareness Month
  • Wishbone Day (Osteogenesis Imperfecta) is also in May
  • So there is no better time to raise awareness of all the hypermobility conditions, than in May!

What you can do to help!

  • Like our Facebook Page
  • Share our posts and website on social media using the hashtag #thehypeabouthypermobility
  • Sign up to our mailing list as a patient or a professional
  • Educate yourself & those around you
  • Help us make some noise online during Awareness Week.

AWARENESS MATERIALS

For you to download & use to help make some HYPE about Hypermobility